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Author
Topic: VERY DISTRESSING STORY (Read 16372 times)

What about creating a new Forum -- calling it, perhaps, "Social Security, Disability and Access to Care" -- where we can post an intro message listing key documents (the SSA Listings, non-profit disability claim assistance, ADAP phone numbers, a link to the IOM report, etc.) and create a new space for the many existing (and future) questions and thoughts pertaining to benefits and access to care?

Just an idea.

We can move this particular thread there, as it's original purpose was to seek clarification regarding an article posted to AIDSmeds, while at the same time providing the space for additional questions and comments that seem to be stemming off this particular thread. I can also go through some of the older threads posted the Forums focusing on, say, SSDI/SSI issues and move them to the new forum.

If anyone is particularly OPPOSED to this idea.. or would like to work with me on setting up an authoritative list of go-to resources... and have ideas about what, in fact, the new forum should focus on (and be called), please let me know.

SSDI/SSI and issues like access to care have always been hot topics in these Forums and, unfortunately, they all too often get lost in the catch-all of "Living With HIV."

Tim

Tim,I think that would be great also. I for one could use the advice on this matter with SSDI. About other members who are going throught the same problems. ;AlohaD

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

An "Access to Care" Forum is a superb idea. There are so many current issues regarding insurance, disability, Cobra, Medicare, Medicaid, Ryan White CARE, and ADAP that it would prove to be a huge resource and helpful to many--especially with changes in all these areas and with the current economic recession (depression?) and the resulting need for increased governmental assistance at the very time when national and state budgets are in a dire crisis. I would only wish that a benefits expert could moderate the discussion and answer questions, because this topic is extremely complicated and confusing, with such different regulations and available help so variable from state to state. In addition, the push for HIV testing, without comparable attention to access to care, is self-defeating and tragic; IMHO, it's one of the reasons why people are reluctant to be tested, yet it's never discussed by the CDC and others who just blithely urge testing, testing, testing and don't consider what happens afterward.

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"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

I would only wish that a benefits expert could moderate the discussion and answer questions, because this topic is extremely complicated and confusing, with such different regulations and available help so variable from state to state.

I agree totally with this, my dear Edwina. However, I'm not even sure if one exists. Goodness knows I've even been given incorrect information from case managers more than once in two different states. The best solution I've come up with is finding a circle of people in my local area that are on similar programs to double check any information I'm given by case managers.

Doctors...........LOL I learned thur the yrs to actually take everything they say w/ a gain-of-salt, if I listened to everything they told me to do, and what not to do, I'd be in a Metal institution just trying to decipher all of that carp they spew, it get's VERY CONFUSING, and they should realize this, but, sadly a lot of them don't

Hey Mods I posted this in the wrong forum, I wanted this to go into the ABC-News thread, but I cannot find it for the life of me HIV Brain -fog stakes me yet Again, Please put this there Many Thanks......

« Last Edit: October 03, 2010, 02:07:32 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

A benefits expert from where? We have people who are very knowledgeable, but the benefits and the processes necessary to obtain and maintain them vary from state to state in the US. We'd need someone who could research all fifty states (and sometimes the process varies from county to county in a state) to give seriously relevant information, and not just general .gov stuff.

I am curious as to how this will work, beyond those of us who have gone through the process (recently) helping others.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Well, I'm happy to report that I've been in touch with Sweetprince. He's looking forward to rejoining the Forums and has agreed to serve as an "expert member" of the new forum, which I'll be setting up today -- it should be open by tomorrow.

JR (Sweetprince) is an attorney with tremendous knowledge of SSDI/SSI and other benefits programs and I'm sure he's ideally suited to answer a great number of questions. If he's unable to answer question or address an issue that's much more regional in nature, I'm sure he'll either investigate the situation, provide some sort of referral for additional info, or simply say he doesn't know.

Anyway, look for the new forum -- and Sweetprince's return -- in the next few days.

Here is what I have learned after 12 yrs. of being on SSDI, and I don't think I'm wrong about any of thisif you follow the rules, and do doctor-follow-ups, like blood work, taking your Meds, and keeping your overall health w/ HIV/AIDS SSA won't pull the rug out from under you, they will if, you don't do any of these thingsand you don't hold up your part of the deal w/ them, I've NEVER been reviewed by SSA, and I don't think I EVER will as long as I follow the rules.....

SSA knows when you go to the doctor, and how many times, they know just how sick/well you still are, I have medicare, so they know, who I'm seeing why, and where I'm going and how often, it's when you start doing things that send RED-FLAGS is when SSA will start Fuckingwith you and your benefits.....you have to play there game, if you don't you will suffer.......I won't go into details here, but those of you who have ever lost there benefits, and had a hard time getting them back KNOW what I'm talking about here......

« Last Edit: October 05, 2010, 11:11:50 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Here is what I have learned after 12 yrs. of being on SSDI, and I don't think I'm wrong about any of thisif you follow the rules, and do doctor-follow-ups, like blood work, taking your Meds, and keeping your overall health w/ HIV/AIDS SSA won't pull the rug out from under you, they will if, you don't do any of these thingsand you don't hold up your part of the deal w/ them, I've NEVER been reviewed by SSA, and I don't think I EVER will as long as I follow the rules.....

SSA knows when you go to the doctor, and how many times, they know just how sick/well you still are, I have medicare, so they know, who I'm seeing why, and where I'm going and how often, it's when you start doing things that send RED-FLAGS is when SSA will start Fuckingwith you and your benefits.....you have to play there game, if you don't you will suffer.......I won't go into details here, but those of you who have ever lost there benefits, and had a hard time getting them back KNOW what I'm talking about here......

Actually the review issue is how your file was first set up, and it will state the review frequency in your initial awards letter clearly. Hence why I get review forms every three years, but seemingly it's a perfunctorily thing.

Actually the review issue is how your file was first set up, and it will state the review frequency in your initial awards letter clearly. Hence why I get review forms every three years, but seemingly it's a perfunctorily thing.

I've NEVER gotten any review letters, so maybe my SSDI was set up a little differently back in Calif. in 98 what I understand, the ASO I go too are the ones that take care of these things as well as the HIV/AIDS clinic I go to, my old ID Doctor told me that SSA looks at health records frequently without sending you out anything.....I cannot speak for other states are what they may do and not do, just ask MARK he knows what I'm talking about here in New Mexico, as far as what they do....

« Last Edit: October 05, 2010, 11:30:10 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

So, what part of your post did you think I cannot read, I understood it very well...I'm a little confused by your last reply, your reviews and how often you get them really have nothing to do with anyone elseeach SSDI-case can be very different than yours

« Last Edit: October 05, 2010, 11:39:46 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

When I got my benefits, I was given a 3-5 year time frame for reviews. After 3 years I had a review and another four years later. Soon after the last review, I received a letter stating that I would no longer be reviewed, as they determined I had little chance of my health improving. The only reviews I have now are for my private disability insurance.

When I got my benefits, I was given a 3-5 year time frame for reviews. After 3 years I had a review and another four years later. Soon after the last review, I received a letter stating that I would no longer be reviewed, as they determined I had little chance of my health improving. The only reviews I have now are for my private disability insurance.

I'm glad you bought this up, Thanks Joe my HIV Brain Fog eludes me sometimes, if i recall correctly, I got the same letter, shortly after I was approved for SSDI back in 98, it was in 2001 when I got the letter that stated "would no longer be reviewed, as they determined I had little chance of my health improving" but the funny thing is I was never reviewed by SSA before...

« Last Edit: October 05, 2010, 12:11:20 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

So, what part of your post did you think I cannot read, I understood it very well...I'm a little confused by your last reply, your reviews and how often you get them really have nothing to do with anyone elseeach SSDI-case can be very different than yours

Which is why I clearly stated that in one's initial award letter SSA states the frequency of any reviews, if applicable. Hence why I stated that you can't read.

i was awarded disability in dec 1999. i was reviewed every 6 months for the first two years, and then once a year for the next two years. After that I received a notice that I would not be reviewed again.

Anyway, look for the new forum -- and Sweetprince's return -- in the next few days.

And then POOF! I magically appear!But, since I'm commenting as an "expert" I need to go by my real name.

OK, just a few thoughts about the IoM recommendations. First, they are only recommendations from a board of physicians. The rules that are finally adopted will probably look a lot like what we currently have. This is because a disability determination is a legal judgment, not a medical diagnosis. A medical diagnosis is considered "a nice suggestion" but has never been dispositive of legal disability. If it were, disability would be much easier to prove. I would only need to tell your doctor to say that you are disabled, and that would be it.Medicine operates on numbers. Law wants to operate on numbers, but we lawyers won't let it. So, for instance, if medicine says that <50 CD4 means disability, law will ask if that means someone who has recovered to 51 CD4s no longer has a severely compromised immune system. That is the broad legal standard from the case law, which the recommendations do not touch. The term is too vague to have any meaning in medicine, but lawyers eat it for breakfast. Same applies to OIs. If you've had one of the listed ones, but you've since recovered, does that mean your immune system is no longer compromised? See what I mean? Physicians have numbers; lawyers have arguments about what those numbers mean or don't mean.Another nit-picky issue I have with the recommendations: disability has to be proved with medical evidence--test results generally. SSA does not accept an undocumented diagnosis ever, that I'm aware of. Yet several of the "side-effects" of HIV infection mentioned in the listings are routinely missed, or misdiagnosed, or given a "rule out" diagnosis. Case in point--wasting is mentioned. But no one knows what causes wasting. It is usually diagnosed via profound weight loss, but that is not definitive. So wasting is legally impossible to prove, thus it could never be the sole basis for a disability determination, even though anyone who has experienced it would probably say that it was debilitating. Not very helpful, is it?So I don't think the recommendations are going to matter much. But let's go worst case for a minute, and assume that they are enacted as they stand. They would most likely only apply to new applications. Anyone who is currently receiving SSDI would still be subject to the definition of disability that applied when their application was approved. That is because SSDI is a vested interested, and there is a constitutional prohibition against passing ex post facto laws (which this would be). SSI is not vested, so eligibility for that program might be affected. End worst case scenario.I don't think this is an austerity measure, either. If that was the intention, it is pretty poorly thought out. It won't stem applications. You don't have to be disabled to apply for benefits, or even to take the claim to a hearing, so tightening the requirements won't have any effect there. What drives disability applications is the economic climate. Also, any meritorious claim that ends up in federal trial court (usually the last stop) will cost the government attorney fees for the claimant. It can cost the government the equivalent of a couple years of benefits to move one case through the system, plus the claimant keeps the benefit while the case is being resolved. Not much savings there. On top of that, the total amount paid to HIV+ beneficiaries is a tiny proportion of the overall Social Security program. This change wouldn't even make a meaningful dent in the deficit.So to sum up, they are only recommendations, not regulations yet. They probably won't be enacted as they currently read. And if you are currently receiving SSDI, they probably won't cause you to lose your benefit. The physicians did what they were asked to do. It was one part of the process. Now it falls to the advocates to make their voices heard as SSA decides how to write the rules.For what it's worth, I don't think any of the recommended changes are a good idea.

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It goes like thisThe fourth, the fifth,The minor fall, the major lift,The baffled king composing Hallelujah!

This really isn't new but I didn't see it posted anywhere in this thread and I thought it might add to the discussion. This is Dr. Volberding's explanation of the IoM proposed revisions to SSA disability for people with HIV.

This press release is presented in 2 parts (this post and the one following). HT to Brian for sending it to me.

The following article, originally published September 21, has been revised to reflect clarifications from the lead author of the IOM report.

A new report issued by the Institute of Medicine (IOM) on September 13 says the criteria used by the U.S. Social Security Administration (SSA) to gauge HIV-related disability is outdated and should be overhauled to include new qualifications based on CD4 cell counts and specific sets of medical conditions. The IOM recommendations—requested by SSA—will only apply to new Social Security disability applicants once the existing criteria are amended; current disability claimants will not be effected by the proposed changes.

The IOM recommendations, which have yet to be officially reviewed by SSA, reflect the fact that modern-day antiretroviral (ARV) therapy can often improve the health of HIV-positive people with low CD4 counts or a history of AIDS-related opportunistic infections and, in turn, effectively reduce the need for disability benefits. The report also stresses the need for disability benefits for people living with HIV experiencing certain non-AIDS-related complications and ARV treatment-related side effects that can lead to disability.

The HIV Infection Listings, established in 1993, are the criteria currently used to determine whether people living with HIV are disabled by their infection and eligible for benefits. For example, a person living with HIV and a history of employment may be eligible for Social Security Disability Insurance (SSDI)—and, with it, access to Medicare—once a serious AIDS-defining illness has been diangosed, such as Mycobacterium avium complex or cytomegalovirus. Other benefits, including Social Security Income (SSI) and Medicaid for people living with HIV who have limited employment histories, are also dependent on disability status as determined by SSA.

Since the Listings were created, the IOM report argues, HIV care has advanced and the disease has dramatically changed from a uniformly fatal condition to a potentially chronic manageable infection, in which CD4 cell recovery and a return to physical health—and ability to work—is an expected positive consequence of contemporary ARV treatment. Conversely, a number of non-AIDS-related health complications are becoming increasingly prevalent among people living with HIV receiving ARV therapy—such as neurocognitive impairment, chronic kidney disease, osteoporosis and a number of treatment-associated side effects—many of which can cause disability and were not included in the original 1993 HIV Infection Listings.

To account for the more recent reality that opportunistic infections can be cured or prevented by ARV treatment and prophylaxis, the potential health consequences of ARV therapy and the increasing prevalence of conditions that can occur jointly with HIV infection, IOM is now recommending to SSA that people living with HIV meet one of the following criteria to qualify for disability benefits:

* A CD4 cell count at or below 50 cells per cubic millimeter of blood serum, a laboratory benchmark that indicates an advanced stage of illness. * One of a few rare but fatal or severely disabling HIV-associated conditions, such as pulmonary Kaposi's sarcoma, certainlymphomas, dementia or progressive multifocal leukoencephalopathy (PML). * An HIV-associated condition that appears in another section of SSA’s full Listing of Impairment, such as cardiovascular disease, chronic kidney disease and hepatitis. * An HIV-associated condition that is not already included in any other section, such as neuropathy, neurocognitive disorders and wasting syndrome.

In short, the IOM committee recommends that SSA move away from a list of less common AIDS-defining opportunistic infections and focus on manifestations and disease states that are more likely to be associated with disability today.

In addition to IOM’s disability-defining criteria recommendations, it also stresses the importance of mandated, regular reassessments of a person’s disability status by the SSA. “Since antiretroviral treatment often allows clinical improvement over a period of one or two years,” the IOM report suggests, “the committee believes claimants allowed under such a listing should be reevaluated periodically for disability status. The committee believes three years would allow for a sustained response and is the maximum practical period for Social Security Administration (SSA) reassessment.”

For example, in a person living with HIV deemed disabled because of a CD4 count below 50 cells, “if the claimant’s CD4 count exceeds the minimum threshold and the claimant is not disabled according to other sublistings [after three years], he should no longer receive disability benefits. However, in the event that the CD4 count drops below 50 cells, his disability benefits should be reinstated.”

Only those diagnosed with fatal or severe HIV-associated conditions (see the second bullet point above) will be granted permanent, "compassionate" disability status and will not be required to undergo medical reassessments.

IOM notes that the proposed revisions to the Listings affect new HIV-positive SSDI and SSI applicants only and are not to be applied retroactively. "The protection of those with existing disability is a solid part of SSA," says Paul Volberding, professor of medicine at the University of California, San Francisco, and a lead author of the IOM report. "SSA was clear that revisions are not allowed to withdraw existing benefits."

Second part of press release follows.

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It goes like thisThe fourth, the fifth,The minor fall, the major lift,The baffled king composing Hallelujah!

Here's the rest. This should provide some fodder for brainstorming a response to the IoM.

Aware that some community activists are concerned about the possiblity of medical reassessments for those currently receiving SSA benefits, along with the suggestion that revisions for new claimants will create a two-tier system for disability beneficiaries, Volberding urges participation in the SSA review, which will likely involving a public comment period. "Community advocates should be engaged in this process, as the IOM recommendations are only the start of a discussion, not the end by any means," he says.

Another concern among some community activists is that the the IOM report only addresses changes to SSDI and SSI qualification requirements—the committee sidesteps the important issue of access to care that, for thousands of people living with HIV, is tied to SSA disability status. At present, people living with HIV who are uninsured can access Medicare or Medicaid, once they have been deemed disabled by SSA. While the new recommendations may make it easier for some people living with HIV to qualify for these public health insurance programs, it is possible that the absence of list of serious opportunistic infections—some of which can occur at CD4 counts above 50—will hinder the ability of others to access health care when they need it.

"Although the issues of … access to care [is] critical in the discussion of Social Security disability benefits," the IOM report authors write, "in-depth discussion of the means by which people receive treatment and medications was deemed outside the Committee’s scope." SSA, in turn, will be left to grapple with the issue of how to retain people in care and on ARV treatment if the criteria for disability benefits are changed, a task that will likely be made much more difficult in light of existing AIDS Drug Assistance Program (ADAP) waiting lists for uninsured or under-insured people living with HIV and other changes stemming from the recent passage of health care reform legislation.

"We completely appreciate the linkage of disability to care access," says Volberding. "Now, one has to get an OI for easy access. The revisions we suggest would allow the many who are diagnosed with advanced stage disease but without an OI to gain access. The suggested changes would allow compassionate disability for those with still terrible complications and would clarify the relationship between HIV Listings and the existing ones for problems now appreciated as HIV related like cardiovascular disease.

"The whole combination of disability benefits with Ryan White and ADAP is a completely appropriate area for a community dialog," he adds, "but trying to ignore the difference between AIDS in 1993 and the situation today seems hard to hold too seriously."

Discuss.

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It goes like thisThe fourth, the fifth,The minor fall, the major lift,The baffled king composing Hallelujah!

Hi all,I got my discharge papers for bankruptcy yesterday in the mail. Boy what a relief. I celebrated by having a drink for the first time since my birthday. That was a load off of my shoulders. Now all I have to worry about is getting my appeal for SSDI approved. AlohaOh, my previous ID doctor was the first one on my list of creditors . The life foundation and the Gregory house in Hawaii is helping me with my utilities and I'm on a waiting list for aid with my share of the rent. Until then I have food stamps and state aid. It was a good day yesterday.